Posts: 7

Topic: Overdue Update

Hi One and All,

I was recently emailed by a user of this site, who, considering my prolonged period of silence had to prod gently about my status. With CC, you are better, the same or worse- with the same or worse not that great and better not that common. I answered her back, not sparing her my particular brand of unreserved observations, recommendations, insights, delights, kvetches and humor about CC, cancer, medical treatment in the USA currently and life & death overall. As perfectionist and caring guy, you can just imagine how all the errors, blunders, stupidity, rigidity and mess-ups drive me crazy. Because they hurt people. My CC health is great. On a scale of 100, I give it a 98. My CA 19-9, 120 before the Whipple, has run 4-12 since. My PET, CAT and MRI scans are totally clear, and they are the full series ($14,000/scan). I have no symptoms of any kind. Notably, I have nothing from the Whipple itself- no adhesions, inner scaring I can detect, digestive problems, or need for insulin. Some top docs told me my Whipple is the best healing incision of that type they ever saw, and these are senior dermo’s and surgeons, so I feel very lucky. I have a tiny bit of pulling at the scarline that is relieved with a kind of pinching massage to break up tight tissue. At 66 and with a vast history of bodily adventure, I am slowly falling apart elsewhere with bone-on-bone hips, foraminal stenosis, Barrett’s Esophagus (that can develop into esophageal ca, just a notch better than cc on the cancer continuum) and varying health squawks. I do my best to treat them according to what my body likes. Most of us just supplicate ourselves before The Doc and do what our insurance will pay for. Because I don’t, I vex certain docs and spend tons on alternative medicines and have to work very, very hard. I am most upset with our crazed ‘health care system’ which is a series of different systems for different kinds of people, and woe betide those who are one of the ‘wrong’ kinds. It overtakes one’s entire life in the final years as we spend so much time and money in clinics and shuffling between tests. Historically, traditionally, we live until we die, do the best we can, pay what we can and hope insurance and the government step in. But along come drugs at $30,000/injection and a few other things, and we find out we can run out of money before we can run out of physical life. What are our choices? I never considered this that much. I never thought it was literally “Pay or Die”, but I believe so now. I have wealthy friends who only worry over physical health as they have enough money. But I also have ones who have to choose between treatment options or running totally out of money at some senior age like 75. Who wants to old, wobbly, unemployable and flat broke? Some are literally mapping out their remaining time and money so they enjoy quality time now and maybe chop off the messy last years when they might become little more than medical specimens racing from one doctor or hospital to another while inevitably on the way down no matter what they are doing. For me this is especially troubling. I had hoped to retire and do OK in a modest way during my final years. But I still need to work at 66. Medicare would have been great had I been on it when I got CC and had the Whipple, so I didn’t have to shell out that extra $122,000 this cancer cost me out of pocket. My pancreatic enzyme is around $475/mo. even on the Medicare supplement drug plan. I can run up $500-3000 in alternative medical expenses/mo. without blinking. If I cut back on these, I fear I am compromising my health. If I don’t, I fear running out of money. I can almost see a cartoon panel of me in a few years exulting over ‘beating cancer’ as they wheel me into a dilapidated nursing home nestled in a slum neighborhood where the streets teem with packs of wild dogs and carjackings. “Cancer couldn’t get him, but the economics of the current US healthcare system could- and did”, I don’t want my epitaph to read, but I could be heading in that direction. So, I remain around, obstreperous and cantankerous as ever, wishing things to be better, certainly for CC patients, and willing to work toward anything that helps. Anyone is free to write me on this site or at Jeff@JGYoga.com.

Re: Overdue Update

Hi Willow,

Thank you very much. I have had sort of carved out for me a special spot for those who survive the unusual (it's happened to me before) and are relatively unconstrained by religion, family, tradition, small town, occupation or other limiting factors to just go ahead and say what they feel. Why is health care so expensive? Confusing? Inconsistent? Is this the best we can do? What kind of society are we to put men on the moon but are unable or unwilling to see that the old, sick and injured are at least comfortable, informed and treated humanely? "All politics is local"? Well, try medicine. It's not giant gleaming hospitals being built or slick commercials on Sunday news shows that is 'medicine', it's who you see, what you are told and how you wind up feeling when you show up at the doc's office, and it's not always so gleaming.

Re: Overdue Update

Since I continue to show greater ability to handle cancer than computers, this post may wind up anywhere or even nowhere. I hope it's visible and helpful or at least amusing.

As she said in the movie Poltergeist, "He's back".

BEASTIE COMES BACK

I think it’s coming to get me- but slowly. Isn’t that how it is for us all? My test results are unclear but suggest the progress of cancer somewhere within me. For details, read on:

The 0.9 mass in Jan was 1.1 cm. in April, a slight but measurable growth in size. Many additional scattered nodules have appeared. In general, a large body growing and new small ones is the worst progression. But none of the nodules was PET positive (took up glucose and thus showed high metabolic activity associated with fast-growing cancers) and the 1.1 only took up 1.6 SUV (you’d expect at least a 7.0), so the 1.1 might just be a post-surgical inflammation. SUV=3 was found in the area of the clips from the gallbladder removal 2.5 years ago, so there might be cancer there.

It seems like it’s somewhere as the CA 19-9 (119 before the Whipple, then 4-11 thereafter) has had successive upticks and now reads 36 (the standard is you always want to be below 37). I could get an endoscopic ultrasound to explore those SUV 3 masses near the clips. I’m not sure about the 1.1 in my upper left lung lobe as it’s a long way in, either around the scapula or pec, and getting a chunk out for good diagnosis would require the large needle that often creates serious lung crises, like a pneumothorax.

Ideally, one desires tests that, a) Tell a lot and hurt very little. Tests that, b) Maim and don’t advance knowledge I would like to avoid. Those two liver biopsies I had? They were b’s. Even if some one mass is cancer positive, how fast is it progressing? If a procedure is done, does it buy me more time? How much? At what cost? How do I feel during that time?

Right now I am symptom-free and strong. My gut is fragile but OK. Since the pancreas continues to shrink after a Whipple, I think it’s now so small it can’t produce sufficient insulin. My blood sugar is creeping up, and psychologically I now long for coffee cakes and foods I’d always hated and rejected my entire life.

All I really care about is how I feel. Right now it’s good. To review my definitions, they are:

1. Regular life: What we do all the time without thinking2. Good time: Begins when you learn you have a fatal condition. During this period, you feel great3. Medium time: Begins when you start to feel the effects of your disease, but you can still function OK4. Bad time: You feel terrible and can’t do much5. Death: No need to explain

I guess I am at the start of #2 above. I want this time to last as long as possible but can’t assist. Just how long I get to remain in #2 is unclear. I am concerned that treatments or even tests could push me out of #2 and into #3 or even #4, and then I would never be able to get back. It’s a one-way, one-time mistake you never want to make. I favor dwelling in #2 as long as possible, accommodating to #3 as best I can and racing thru #4 as quickly as possible. The common course is for #2 to be short due to denial of morbidity and late diagnosis and for #4 to be long due to denial of mortality and to enrich the medical industry.

All this considered, there may be another dinner for y’all, probably at the same place. If the first was titled Ain’t Dead Yet, this upcoming one will be yclept Way to Go, Tomorrow Never Knows or Varmint Still Wrigglin’.

Love, Jeff jeff@jgyoga.com

PS Much discovered. The Jan PET was not positive because at 0.9 the tumor was too small to light up. The CA 19-9 of 36 means my body is reacting to the presence of cancer- but where? The lung mass is typical of cc metastasis and the small masses at the junction of several organs near the liver is where the original cancer was. No surgery, chemo or radiation is likely to help any of this and would make me very sick. Even taking the endoscopic ultrasound is questionable, as results are often unclear and then they will want to start sucking out pieces with a needle or other stuff.

Given this, it appears the cancer has recrudesced and/or metastasized and that neither site is effectively treatable. In no case am I curable, and it appears there is little to be gained from procedures designed to provide helpful data. Math tells us that a 1.1 size tumor is around 37% larger than the volume of a 0.9 tumor, the amount the one lung mass increased its size in 3 months. V=lxπr2 and V=4/3πr3.

Right now my plans are to repeat the CA 19-9 and PET in 60-90 days and live energetically from now until then. This moment really is the inauguration of #2. So different from other times I’ve felt bad- injuries, diseases, hangovers- this time there will no feeling better after feeling bad. I may have upticks, but I will be on a downslope. I will lose energy, and it will not rebound.

Time to travel. While my bad hips are an annoyance, I’ll work around them. I’ll get to England, France and Italy soon, then go over to Thailand, a better place to be when sick than Europe. Then I’ll come back here to die- probably.

I am reading “How We Die” by Neuland, a doctor who for decades was realistic about death. Until it came to his own brother. Then he was all too human and gave him false hope, put him through unnecessary tests, added to his suffering, etc. because he himself could not be totally clinical. I may be having that now. [Old friend and retired onco] Ted said within 3 sentences speaking with [my current onco] David he knew how dire my condition was and that David was sort of soft-pedaling it to and from himself because Ted says David likes me and doesn’t like this news. David’s ideas about it being inflammation, post-surgical debris, etc. seemed to Ted to be desperate graspings. Ted said at one point in the conversation he felt himself get emotional.

Outside of misplacing things and feeling a bit spaced-out, I’m the last guy on my own block to feel this within. If and when I do, I’ll let you know. Up to a point. Obviously, at some time, I will feel less need and have less energy to express anything outward, so I’m loading up now. Read it while I can write it. Afterwards, there will be silence and peace.

Re: Overdue Update

Hello Jeff,I am new to these posts, but boy did your story touch me. My friend has been diagnosed with cc and I have been researching. Please check out First Immune, specially if you travel to England. You can contact me at: chris@youngstarhouse.comif you like more informationBestChrisna

Re: Overdue Update

Hi Jeff, You write so well. Thank you for sharing your thoughts/emotions. There seems to be one or more CC or Biliary Tract Cancer (3 ran the LA marathon) groups in LA and I am wondering how to connect re best docs/trials. Any ideas? Best, J

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